Self Advocacy

Katherine Owen (UK) and Jackie Downer (UK)

Self-advocacy is one of the most important ways in which people with intellectual disabilities have a voice of their own. The words of Jackie Downer, a self-advocate, encapsulate all that self-advocacy has the potential to be. Her words emphasise that having a voice of your own is immensely personal and therefore is important to different people for different reasons. Through her words, the importance of people with intellectual disabilities having a voice of their own, is emphasised.

In explaining self-advocacy, Jackie says, "Broken down it means 'speaking for yourself', 'communicating in other ways', but it's personal. For me it means that I can speak for myself. It means I've got a voice and even without a voice I can communicate in other ways. It means yes and no- most important- 'No, I don't want tea, I want coffee, I don't want sugar'- all the things we take for granted. It means people must listen to me, I can take a risk, I can have a relationship, that can be hard. I can think for myself, I can go to the shop with support and if I need help, people can help me…." (Jackie Downer in Goodley 2000:81).

'Speaking for yourself' Self-advocacy, or having a voice of your own, is fundamental to both asserting yourself and exploring yourself. This is important because it is directly linked to building confidence and self-esteem. It is important to have the possibility of talking about your life and your experiences so that who you are can be validated by others. In this way having a voice of your own has the power to construct your identity.

'I've got a voice and even without a voice I can communicate in other ways' It is important to emphasize that having a voice of your own does not necessarily mean having a literal voice. People who are non-verbal are able to communicate themselves, their likes and dislikes, their wants and needs, in ways other than words. For example, taking a person by the hand to show them where they want to go, pointing to pictures, symbols or photographs. This is important because self-advocacy is sometimes criticized for only being relevant to people who have mild to moderate intellectual disabilities. It is necessary to acknowledge that all people, even those with severe intellectual disabilities, can communicate and express themselves.

'It means Yes and No'
Having a voice is important as a means by which you can communicate to others who you are, what you like, what you don't like, etc. It is important because it means you can make choices about your life and about what is important to you. As Jackie's words express, it can be about seemingly small things, like whether you take sugar in your tea, or about bigger things, like where you want to live. If you have your own voice then other people are less able to make assumptions about you and your life. This is especially important for people with intellectual disabilities who have traditionally been seen as incapable, as not having their own opinions, desires and wishes, and as being dependent on those who look after them. In this way having a voice of your own gives you power.

'People must listen to me'
Self-advocacy is important because people can speak out publicly. If people have a voice of their own they can comment on the services they use, can define how they want to be known- as people with intellectual disabilities rather than 'handicapped', can campaign for issues which are important to them, for example the closure of institutions or how money is spent in day services, can advise on the creation of new policies and services, etc.

'I can take a risk, I can have a relationship'
Self-advocacy is partly about knowing your rights as a human being. This is vitally important in a society which still discriminates against people, who have the label of intellectual disability, owning their own home, falling in love, getting married, having children and working in ordinary workplaces. If you have a voice of your own you can assert the right to take a risk, to choose again and to learn from your mistakes.

'I can think for myself'
One of the most important consequences of having a voice of your own is that it has the power to challenge how people with intellectual disabilities are thought about in society. They have traditionally been seen as a group who were incapable of thought, of action, of being able to live their lives as others do. This has led to their discrimination, segregation and isolation. If this perception is challenged, then people with intellectual disabilities will be nearer to being included and treated as equals in our society.

'I can go to the shop with support and if I need help, people can help me'
Finally, having a voice of your own is important because people with intellectual disabilities have traditionally been dependant on carers, professionals, and parents, for knowing what was best for them. If people have a voice of their own then the power relationship is significantly altered. It does not deny that people with intellectual disabilities need help and support, but emphasizes that they can define what kind of help they need, when they need it and for how long. It is thus acknowledged that all people have strengths and weaknesses and that no one individual can be either totally 'capable' or 'incapable'.

Through Jackie's words it can be seen why it is important for people with intellectual disabilities to have a voice of their own. Having a voice is important for everyone, but for people with intellectual disabilities it is crucial due to their segregated, isolated and discriminated against, position in society.

REFERENCES
Goodley, D. (2000) Self-Advocacy in the Lives of People with Learning Difficulties, Buckingham: Open University Press.

This article was written in 2002. Reviewed in 2019, content continues to be applicable.